To go to the walk-in centre/A&E (suspected MS)

[florenceandthemac]

Just over a week ago, my GP referred me for an MRI to 'rule out' multiple sclerosis, due to symptoms of eye pain/vision problems over the last two years and numb/week/tingling hands that has come on over the previous several weeks. When I asked how likely it was that MS would be just 'ruled out' he just responded that my symptoms are indicators of MS and need to be checked.
He said it was a 2-4 week wait for an MRI, but as I get private healthcare via work I decided to go private to hopefully get seen faster, however I can't get a private MRI without having seen a specialist first, so I'm now booked in with a private neurologist but the earliest I could get was in three weeks time.

In the last couple of days, my hands have started feeling a lot more 'odd' than they have been, very weak and tingly, and I am now suffering from pins and needles/tingling feelings in my feet. My lower left leg just generally feels odd/irritable.
I don't know if I am supposed to sit this out for another three weeks until my appointment, or if the fact symptoms are getting worse I should go and get seen to earlier, at maybe the walk-in centre (A&E seems too dramatic)?
Any advice?

These departments are not a gateway to earlier appointments. Go back to your GP.

I was taken to hospital when my legs went numb and I couldn’t walk. They told me it could be MS but they still didn’t scan me there and then. They referred me urgently and I had to wait another three weeks. You just have to sit it out unfortunately.

Sounds like your symptoms worsening is more psychological. I don't think this is an emergency I personally would wait, hard as it is.

I think you're right, I'm struggling to think straight at the minute.
I guess I just thought my GP is already aware and has done the necessary referral, therefore what difference will it make going back, but with my symptoms getting worse I'm just more worried and didn't know whether I have to just let them get worse until I'm seen

A&E won't be able to get you scanned any more quickly. Only go if you lose the ability to pee/poo.
Keep in touch with your Gp in the meantime.

Sorry you're symptoms are worsening.

If it's not an accident or an emergency then it doesn't belong in A+E, and your walk in center won't be able to bring forward your neurologist appointment, nor will they necessarily be at all clued up on MS.

I have MS. It's horrible being in "limbo" and not getting any clarity one way or the other. Sadly such a limbo situation is quite common. A&E is not the place for you.

I remember a trip to A&E with some torso and leg issues that were very disturbing (before diagnosis) and, after a stressful long wait, was told I was "constipated". A&E aren't really able to help and it's not going to be a fast track option.

If it is any comfort, my stress and anxiety levels improved dramatically once I got the certainty of diagnosis. 12 years on and my symptoms have not worsened. My life definitely changed but not in a terrifying unmanageable way.

Thank you for sharing that @bellinisurge
I am definitely at a point now where I know a diagnosis will not feel as bad as this waiting

Just look for another neurologist - some will see you online for your first appt so does not matter where they are. You just need to get them to agree to an mri referral

I have been given a list of three neurologists that I can see via my private healthcare. The other 2 didn't have anything until May and June, @ittakes2!

Can you go for an appointment at short notice? If so, then let both the NHS MRI team and the Private Consultant's secretary know that you are able to do so if they get any cancellations. Might not help, but it's worth a try.

It's so awful waiting. And, when you feel at your most vulnerable, having to battle to get appointments is absolutely dreadful.

I often kind of joke that hearing I had MS was the thing that lifted me out of clinical depression. The certainty changed everything.

If you google "MS Society" (it's a charity) and "Limboland" you will see how common it is.
I'm not really part of an MS "community" - I prefer to dip in and out of resources when I need it. But that Charity is really good.

Just wanted to share that I had all those symptoms, including loss of vision on a number of episodes that led to investigations that turned out to be all caused by extreme stress and anxiety as a result.

Do although these could indeed be MS, it certainly isn't a definite diagnostic at this stage.

I can @starfishmummy, so I have asked the hospital I'm booked in at to call me with any cancellations, but I think I'm also going to give them a ring every couple of days (this is very unlike me, but my friends have suggested there's "only me who's going to fight for me" so I should do)

Hey OP, I have MS but A&E won't be able to help (I shouldn't think so anyway!)

Best thing for the headaches / fogginess and weird eye sight is to sip icey cold water. I also recommend an acupressure mat!

If you're able to take an aspirin, this helps too. Also have a look at the MS Diet - it's really effective x

I remember when I waited for the neurological appointments (42 weeks here!). I ended up being silly and going to the gym. I think it helped - I barely hand strength to hold a pencil but now I can row 10km! 😂 MS makes you do silly things.

Good strength Omega 3 is brilliant too! Can you get hold of some?

Suspected MS may be concerning, but it is neither an accident nor an emergency, so please don't waste A&E staff time.

also I know BUPA allows a second opinion so you could see the one you have booked as a followup with the results

Thanks @CornwallintherainI exercise every day (mixture of running and weights, and mountain climbs at a weekend). I'm very active, and actually the symptoms lessen whilst doing these things. It's sitting at a desk all day that makes the symptoms more noticeable and is driving me insane. I'm glad to hear of you rowing achievements!

I have MS and agree with previous posters - the waiting is very challenging and Limboland is a very real place! With my first symptoms, the GP told me it was either MS or a brain tumour and I still had to wait 3 weeks, it's just the way it goes. Needless to say the MS diagnosis was very welcome when faced with the alternative! I hope your appointment goes well once the time comes.

@florenceandthemac so jelaous!! I wish I lived near mountains!!

My neurologist said computer / screen time and office lighting can trigger all sorts of neuro shenanigans! Make sure you're comfortable and the desk is the right height etc.

Definitely get hold of really good quality Omega 3

<MS group hug>

Thank you @Squaffle

I recently bought a different Omega 3 @Cornwallintherain, I did some research before purchasing so I'm hoping its a good one. Can you recommend one?

Ah the wait is unbearable, I remember it well.

The whole diagnoses takes time. You will have one MRI and then you book you into another one with contrast, then maybe a lumber puncture. Takes forever. It will be highly unlikely that you will get a yes or no with your up coming appointment.

Good news OP is that I've had pins and needles permanently for 5 years (full body). You get used to it and I hardly register it these days.

ex-physio here…..if it is ms and you are in a period of flare this degree of exercise may well be worsening your symptoms….exercise is an important part of treatment for many neuro conditions but with ms you have to be careful to manage energy conservation and activities than raise your body temp significantly. Try Pilates or something restful (meditation/mindfulness highly advised) if you really feel you need to exercise this often. I would certainly cut back massively or pace yourself a bit better until you have a clearer picture…it may well be something else entirely causing your symptoms but obv they need to exclude various things. If you do have any red flag symptoms or sudden change in your condition a&e is of course appropriate but thank goodness you do have private input.